Sharing with others the knowlege I have gained from 15 years of non-stop experience of teaching my autistic son. In this blog you will find explanations and ideas for helping special needs children reach their full potential...plus some personal stories from my son's journey.

Thursday, December 26, 2013

I wish I had been video recording.
I should have recording last year's opening presents....and the year before...and the year before.

But, I didn't.

I guess I never thought to, since it wouldn't really be anything exciting to watch later. No matter how loved the gift was...hidden under the wrapping paper and bows....it was always the same reaction.

Tristen would look at the box intently and not say a word. You could tell in his eyes he was enthralled. We always bought him something from his list that we knew he wanted, so we never thought we would see a "bad" reaction. I think if he didn't particularly care for a gift he would put it aside more quickly than the others without uttering a word.

We are quiet and watch him intently.

We longed for a shout or a gasp or a squeal of excitement. But that just wasn't Tristen's way.

"What do you think?" we would ask cautiously.
"Do you like it?"

"Yes." sometimes accompanied by his infamous half-grin.

He would take his toys and play quietly in his room for hours. We knew he liked his gifts. We knew he was happy and we had made his Christmas wishes come true.

After 16 years of this tradition we were content in it. You can imagine our surprise when this year, everything unexpectedly changed.

He waited his turn.
He started to rip off the paper.
His eyes went wide and his mouth made a large "0" shape as he sucked in the air around him in excitement....."I LOVE THIS!" He exclaimed....hardly able to contain the emotion.

What is happening? Is this my child? Is this some sort of once-in-lifetime thing?
Tristen started to squeal with glee as he started reading the package.

Josh and I looked at each other in shock.

Next gift.

We watched intently again. Maybe we imagined it....

"Minecraft!" His eyes danced and he posed holding up the shirt with a REAL smile on his face...none of the fake gumby smiles of the past.

It continued on...gift after gift.

There was no Wii U....the number one item on his list we just couldn't afford. There was no Super Smash Bros. game....second on his list. Only one thing in his top five most wanted gifts. And yet, he was over joyed and he felt it...he showed it and he shared it with us all.

Seeing him with true excitement that we had missed out on for the past 16 christmas'.....worth the wait.

I think of how I may have taken something that simple for granted; if it had always been there, I would have missed out on this feeling of witnessing a Christmas miracle.

Sunday, December 8, 2013

I must sound pretty presumptuous.
How do I know more than a special education teacher? Or an OT with a masters degree?
I don't have a degree.
I've only spent my entire adult life making it my personal mission to understand how to teach my autistic son. It has been my number one priority....to see the world through his eyes so I can better help him to understand it, cope with it, and be productive in it.

When I started working with autistic children, they were not all like my son. In fact, they were all different....all had different challenges with their autism that was specific to them.
So how come I think I know how to teach them?

I spend a lot of time observing them. I like to see their reactions and read their body language and facial expressions. Sometimes, I engage them in an activity or a topic by instinct. Sometimes it's trial and error.

I get a sort of sense of them. Of who they are, what they like....what motivates them. I LOVE to discover what their favorite things are and see their faces light up!

Not every idea I have had has worked. I will try something, and if I see it is not "clicking" and I can't see a way around it.... a way to tweek it to get the understanding needed....we try something else. There are some things you can get through to them, and some things you can't.

A lot has to do with whether the child cares about it or not.

I once was asked to work with a child on buttoning their pants. This was an IEP goal. This particular child did not care if his pants were buttoned. He was not embarrassed to be seen in his underwear, and would even shuffle out of the bathroom with his pants around his ankles rather than try to button his pants. We tried lots of hand over hand and prompting. But what it came down to was that he simply didn't care. It didn't bother him, so what was the incentive to do it?

These kids aren't robots. Sometimes I think educators think if we "train" them over and over and over again, they will just do it out of habit or something. I have never seen that happen without some sort of reward outcome.

Once I see the path in my mind with all the steps to teach a child a task, I will work on it every day...patiently and tirelessly. There is so much out there an autistic child can learn if we but give them the opportunity.

It's like nails on a chalkboard to me when I see a caregiver do things for a child they can do on their own simply because they don't do it fast enough. They are in too much of a hurry to let them do what they can.

Also, if the aide is more worried about participating in the class discussions herself/himself, or doing odd jobs for the teacher, or socializing, rather than focusing on how to help the child learn what he/she can out of the situation.....these are examples of how caregivers can miss opportunities to teach.

I spent some of my most productive days not talking to a single adult. When I was able to do one-on-one work, I would smile, nod or say hello in passing to co-workers, but ultimately, my mind was focused on my student. He needed me to stay focused on him so he felt safe. He needed to know I was there to be his interpreter.

Is it always easy? No. Of course it isn't. There are good days and bad days, just like everything else. But we always made it through.

With the right mind-set, we can all work together to help these children reach their full potential.

It is almost 11pm and I need to be bright-eyed and ready to face the world at 5a.m. Somehow I'm doubting that is going to happen successfully.
I can't sleep. I'm missing my boy.
I was listening to Christmas music today and was reminded of a special song I used to sing to him.
We spent a lot of time doing sensory things together, like swinging outside and using the sensory ball. I would sing to him. For fun, I put his name into songs he liked. I don't know if anyone else knows I did that. It was kind of our special thing.
I can't say that I know what it's like to lose a child. I'm sure my sorrow in having to move away after five years is but a fraction of that pain.
Most days, I try not to think about it. I need to live in the present and be here for my family. My boys need me now, and I wasn't there for them like I should have been when I was working as an aide full-time.
The terrific thing about being an aide that I especially liked was leaving my life at the door. I could walk into the school, and tell myself I needed to focus on my student. I didn't think about bills, or grocery shopping, or what I needed to do after work. It was all about him.
I wanted to give him my full attention so I could understand his non-verbal communications. I wanted him to know my focus was on him.
Kids with autism are smart. They know when you are busy chatting or distracted by a task....and they see it as an opportunity to get away with something. Maybe not all kids....but this kid did that for sure. If he thought I was distracted his behavior would change. He would try to get into things he knew he shouldn't. You had to give the little munchkin credit....he was good!
The time I miss the most was our sensory room time together.
When I took over for his aide when he was in kinder garden, he had a lot of sensory room time. He loved to lay back on a large sensory ball, and with you sitting opposite him, he would put his legs up on your lap so you could push on his chest and bounce him. He LOVED it.
We spent a lot of scheduled time in there alone. The aide told me she got too tired of bouncing him, so she would shut him in the room and just peek at him through the window...sometimes for 45 minutes at a time, while he wandered around the room on his tip toes.
I wanted to use the time more productively. I understood his need for the sensory input/output to help him cope with the tasks set before him at school. Some days my arms would ache after bouncing him so long....but this wasn't about me.
I'd sing him songs. I'd listen to him make sounds. If he made a sound repeatedly, I would sing a song that seemed to match what he was doing.
Soon, I was able to stop bouncing him and wait. Wait in the quiet room, with no sound and no distractions....wait patiently....and he would request a song. Oh how his face would light up with the biggest grin and giggle! We were communicating! We were playing together! It was pure joy!
While it lasted....
Who knows how far we could have gone? How many more words or phrases we could have shared? How many others would he have transferred this knowledge to?
That's the sad part of being an aide. You don't have the final say.
You take direction from the speech therapist, the occupational therapist, possible the physical therapist and the special ed teacher. You do as they say. They make the rules and plan your day (for the most part.)
Someone decided he shouldn't be spending all his time bouncing on the ball. He needed to choose other things to do in the sensory room, like bounce on the trampoline.
It didn't make sense to me. First of all, if it's his sensory time, how can we tell him how to use it? I mean, what fills a sensory void for some won't work for others. Not to mention all of our work towards verbalization was put to a screeching halt.

What I have to remember is, things have changed in special education. Because of budget cuts, they are moving away from one-on-one aides. There are too many kids with severe needs, and even if I was there, I would not be able to teach him the way I believe is best for him.

I am sad because I wish I could do more. I know he is capable of more progress. But by the time these kids get to Middle School, they are so far from their peers, they are basically "contained" for the day. Less and less effort is put into teaching them....they are just there. They are fed and bathroomed. If there behavior is good, they spend a lot of time waiting while the staff takes care of the one's who are difficult.

Monday, November 18, 2013

I found this in my email from a dear Midland, MI friend. Although I only lived there a year, I still feel the love from the church members there. It has been over six years since we have spoken.

I had to double check to see if she was even a facebook friend. I know I don't get any "like"s or comments from her, most likely because she and her husband are very involved in republican politics. It turns out we ARE facebook friends, and she decided long ago not to follow my posts....which I really appreciate, in a way, because if someone doesn't agree with me, I really don't want to hear about it. I don't need to know, because it consumes me with worry. And I don't like to fight.

You would think I would just choose the popular opinions to avoid confrontation.

But nobody can tell me I don't know what I know.

So, I get this strange email, that seems at first to be in support of what I already know, that Tylenol does more harm than good, and I was about to send a quaint reply. I decided I should probably read a bit more closely....and sure enough, it's propaganda from the pro-vaxers.

No...you see...you missed it! It was SO obvious! You THINK it was the vaccines?? (insert chuckle here with a pat on the back) Nooooo.....(big grin) it was the TYLENOL you gave your child BEFORE he got his shots!

I politely replied to my friend as follows:

Thanks, Annette :) As a community, we have known the dangers of Tylenol for quite some time, as it inhibits glutathione. Tristen's vaccine injury was at two days of age at the hospital where he was not given any Tylenol before hand. I believe since we are all individuals, one cannot say only one thing or only another thing will for certain cause autism. We must understand the human body and how the immune system works and do everything in our power to keep our children healthy. I am truly blessed to be able to rely on the spirit to guide me so I can make the best decisions possible for my children :)

Have a blessed day!

Her response:

Agreed. There is never just one answer, since we are all individual and have differentindividual plans from Heavenly Father. You're a great mom!

I try very hard not to judge other's parenting decisions....none of the decisions I have made for my children have been easy. We may see situations differently. In the end, we have to live with our decisions and be able to justify them to God. I'm just doing the best I can. It has taken me a long time to learn and become comfortable with the fact that at any moment I have to be prepared to defend my decisions. They come out of the blue from anywhere at anytime. Even when I think I'm safe from judgement.

I wish I was stronger. I wish I was as brave as so many of the Mother (and father) Warriors out there who take on so much criticism and never give up for their kids. They are doing it for my child....and they are doing it for all the children in the world. I am blessed to be inspired by them.

Thursday, November 7, 2013

First, was my ability to be a stay at home mom. Not everyone gets this chance, but I was very blessed. Because of this, I was able to be his primary and almost sole care giver before he started school, and I could apply what I learned from my classes in the Hannen Program for understanding non-verbal wants and needs and also continue the speech and teacher services he received consistently.

Second....Diet. No doubt...it seems too simple and yet too difficult at the same time. But we saw eye contact and response to people we had not seen before. Also, health issues, like wetting the bed, rashes and allergy symptoms vanished.

Next, glutathione cream. We saw increased speech and cognition.

IV chelation. We knew we were taking a risk, but had read about it in detail and were confident in the medical staff's knowledge. Tristen jumped from a first grade reading level to a fourth grade reading level in a a matter of weeks. His urine output results showed he was passing aluminum, uranium, and cadmium, among others, at shocking levels. We saw a small amount of mercury removed.

Chiropractic. The "arc of life" is basically the curve of your neck, and when x-rayed from a side view, one can measure the degree of the arc, which is typically at 43 degrees for optimal health. Tristen's arc was at a -3. His neck was actually curving the opposite way and cutting off his brain's ability to talk to the rest of his body. He tended to rest his head on his back and look down his nose at things. After only a few adjustments, he was looking straight on at the world. He looked better. He felt better. He lost some of his autistic characteristics and became more friendly, sociable, and easy going.

"The curve in the neck is considered the most important, and has been referred to as the arc of life. This is a term coined by a neurosurgeon due to the importance of the cervical curve and the structure it protects – your nervous system. All of the nerves which control your arms, legs, torso and every one of your internal organs must flow through this area. A pinched nerve in the neck can affect every part of your body.
Alfred Brieg, MD stated that “Loss of the cervical curve (arc of life) stretches the spinal cord 5 to 7cm and produces pathological tension, putting the body in a state of disease.” Multiple studies have shown that a loss of this curve reduces lung capacity by up to 30%; decreased lung capacity has been linked to COPD, heart disease and cancer. Renee Calliet, MD concluded that “decreased curves and abnormal spinal position affects the heart, lungs and digestive system.”http://doctorcathyw.wordpress.com/2010/04/14/the-arc-of-life/

HBOT: We did forty dives in one month. Tristen started talking about his past. He was sharing memories with us from when he was four years old. He was calmer and less distracted.

NeuroProtek: The blend of bioflavanoids have helped Tristen with is verbal expression. He is talking in more complete sentences, and using more age appropriate language. He is wanting to share his thoughts, ideas, likes and dislikes with his family. He is enjoying writing in his journal daily...writing his own sentences and getting more spelling, punctuation and grammar correctly than previously.

Essential Oils: Good things are beginning to emerge....I will keep you posted :D

In my perfect world, I would have a large house for young adults on the spectrum. I want to take the burden off the parents who constantly worry about their children's future after they age out of High School. I would train my staff to listen, have patience and to be calm and consistent with to those who are entrusted to their care. We would have a garden to grow and prepare our own food and we would teach the children why clean food is important. We would eat diets that consisted of fresh clean foods. We would eliminate wheat, dairy and soy for sure. I would have an Hyberbaric Oxygen Tank in our basement for the residents to use each day. They would get chiropractic care every week. That's my kind of heaven :)

Wednesday, November 6, 2013

Tristen and I get dressed, eat breakfast, and take our vitamins and supplements. Tristen starts his chores, and we head out the door to be at Seminary by 6:30. This is a church class for kids in High School where we study scripture. Here we practice social skills, answering questions, making eye contact, and paying attention in general. Tristen gets stickers and after he gets five he earns a special cookie.

We start our first class at 8:00, so when we get home from seminary, I do prep for the day and the kids get their chores done. They do things like sweeping, vacuuming, dishes, dusting, dishes, bathrooms, feeding and watering pets, and personal hygiene.

The State of Texas guidelines for homeschooling is very vague. You can obtain a curriculum from any source; used books, workbooks and/or computer or video screen; teach reading, spelling, grammar, math and a study of good citizenship.

To ensure a study of good citizenship, the boys participate in the Boy Scout program through our church. We also have discussions during different units in our Social/Life Skills class.

Social Skills: We watch videos on proper social interaction. We talk about properly responding when someone talks to you. We bake/prepare food and make personal care products. The unit we are on now, we are tackling sensory obstacles by using Essential Oils, dry brushing while listening to various composers. We made booklets about the benefits of "super-foods" and home-remedies.

Reading: Tristen has been using the "Ask Me" book series which is mostly about science. It takes us four days to read and discuss the book. If he gets excited about a topic and wants to learn more, we go to the Internet to learn more. On Friday, he does a worksheet with questions from the book that I grade as a quiz.

During Tristen's reading time, he needs me one-on-one, so I have Tanner do the 8th grade curriculum from Time4Learning.com Language Arts and LA Extensions on the computer.

P.E.: I use the Texas Learning Essentials to guide me in building a curriculum that benefits both of my children. They do 30 minutes of a workout on the treadmill every day. While exercising, they watch educational shows about health and wellness. Then, they do chiropractic neck and spine exercises to better keep them aligned.

Math: Tanner is able to continue with the Time4Learning website in the Honors Algebra program. He is very independent with few questions. He does lessons, worksheets, quizzes and tests. I go over his grades and we re-do lessons together if he did not understand the material.

For Tristen, Math is a strong point, but he is still not at grade level. Some things he gets extremely easily and does without assistance. Other concepts are too difficult and I help him though. We have used Khan Academy online, and Elementary Advantage Advanced Math for 4th, 5th, and 6th graders, and because it is at his level, and he is able to be tested and get a C or above unassisted. We also do money skills every Friday.

Social Studies: I had a hard time finding an appropriate program for Tristen he could do independently. Much of what he read he did not understand or retain. Tanner, using the Time4Learning program, was having the same trouble at his grade level. I decided to combine them and teach this class myself, using the text, worksheets, quizzes and tests from the website, but I modify them for Tristen and explain more in discussion form for Tanner. Both of their attitudes have changed and they are now enjoying our discussions about the history of the country and are much more cooperative. Tristen surprises me everyday with how much he understands!

Language Arts: Tristen works on journaling, spelling words, building sentences, typing and writing his comic book.

Reading for Tanner: Tanner struggled a lot in public school with reading. He was not very cooperative in homeschool either, until I had him read to me aloud. Now he is excited about sharing his book with me, making connections and predictions. He is becoming a more fluent reader and he is not so afraid of reading.

Science: We use a few different computer programs and learn together as a team. Texas Learning standards have 8th graders doing a lot of experiments, so that is our focus. The boys love science and enjoy the hands on interaction.

We end our school day at 12:20 for a couple of very important reasons.

1. It does not take as much time to teach a subject to two students as you would need to teach a whole class. Being one on one enables us to move on more quickly when I am sure they have a concept, rather than spending a lot of time waiting for everyone to "get it".

2. It is difficult for kids with special needs to spend much more than a half hour on a subject at a time. I know this from my experience as a paraprofessional and from teaching Tristen this past 15 years. Tanner also has a very hard time staying on task and is much more focused with a shorter time frame.

3. When Tanner was in a public Montessori school last year, they did all their work in the mornings and the afternoons were "free time". This is a common practice, and because of this, I feel our school day is appropriate.

4. Many times children with disabilities spend their days with little to no expectations. They go from one place to the next without having to do any work or have academic accountability. Tristen is learning much more than he ever has and is expected to stay on task and learn rather than to sit and daydream.

We hold classes the same days and have vacation the same days as the public schools. What you may not know about public school, is that they can have a late start or early release and still count that day as a full day of school. We, of course, do not do early release days as they do here in town.

There is also "free" time to be considered in public school, such as lunch and recess. That is counted as part of the school day, including assemblies, field trips, morning meeting, PBIS activities where they learn the school rules, centers and story time (for young children), music, art, classroom parties for holidays, etc. There is arguably time "wasted" in school that we do not have to account for in our homeschool program.

The kids are exhausted and in bed by 8:30pm.

This is just a short list of what we have been accomplishing in the past 9 weeks. I am so happy to see my children happy and learning, without the bullying and politics in a public school setting.

Monday, October 28, 2013

When your child starts to fall behind the averages of his peers, it can be alarming. You may start to worry if and when the child will catch up. In the event your child is diagnosed with autism, you will look for therapy in hopes to catch him up to what is appropriate for his age level. And although you may see progress over the months, the rate of progress can be slow.
When your child is around age two, he may not look so different from other two-year-olds. Maybe he doesn't talk, and runs around wildly in circles, but he is still at the adorable toddler stage, where most on-lookers smile warmly in an understanding sort of way. (Sometimes you get the "you are a horrible parent" looks, but hopefully not as often.)
As your child grows and reaches age 4, he may be in a special needs classroom, where he may seem to be one of the higher functioning. As a parent, you focus only on his gains and progress and forget about "the gap".
The gap is where your child is compared to where other children his age are developmentally. When they are cute, silly, kindergartners, their delays are more prominent, but still the child is mostly quirky and enjoyable and their behavior is more acceptable.
The gap becomes more apparent by about third grade. Your child may have lost the chubby cheeks of their youth, but still love to play with Thomas the Tank Engine, while the other boys and girls in the regular education classrooms are looking for boyfriends and girlfriends.

I've watched my son progress, but as the years pass by the gap gets larger and more noticeable after a brief introduction. It is hard for him to read, and people are not quite as loving and understanding to a fifteen year old with pimples and a hint of a moustache. They act uncomfortable.

Even the nicest people, who would never be unkind....are sort of scared, and don't know what to say or how to react. Tristen doesn't notice it, but I do....and it breaks my heart.

This is what I wish they knew:

Include him, while understanding that in his attempts, the task may take longer and may not be done quite right. There may be some instances where things have to be done quickly and/or perfectly, but most of the time, these are only perceptions in our own minds.

Be flexible and understanding. Give him the choice to participate...gently encourage him to do so, but leave it ultimately up to him.

Remember that in his mind he is still a young child. Think about how you would treat a younger sibling or cousin. This is difficult as he grows older on the outside, but not so much on the inside.

Understand that he does not make eye contact or respond to questions easily, and it will take time for him to be comfortable and do so independently. Don't let this discourage you from communicating! He likes being noticed, but is embarrassed by it at the same time.

Don't laugh at him when he is being serious. If he is trying to tell you something and mixes up his words, or if he is reading...please be attentive and don't laugh. There are times when he is silly and having fun, and it would be appropriate to laugh with him, just not "at" him.

I sincerely feel people just don't know....no one has explained to them how to talk to a young adult with autism. We need to get the word out, because they are going to need the experience.

Wednesday, October 23, 2013

I feel I have to clarify.
I am not a conceited person. I am quite the opposite. I have a difficult time admitting I do ANYTHING well....I constantly self evaluate and self criticize.
If my children make it into functioning adults who contribute to society, it will be in spite of me.
However, I would be remiss to not say my unique parenting and parenting choices have not helped my children thus far. I also can not deny being led by my Father in Heaven. It is as true to me and as deep and real as my love for my children.
I couldn't have accomplished what I have without Him. I would not have the gift of instinct to go down the right paths for my family's health. I would not have the blessing of seeing autistic children's strengths and the unique ability to understand how to teach them. I see things and understand things other educators don't see. I owe it to God and can not take credit for it with a clear conscience.
I hope and pray the things I have learned will be useful to other families facing the same challenges.

Tuesday, October 22, 2013

In typical "Meadow" fashion I have been continually going over my interview with the girls from Truther Talk blogradio.
Before the interview, I prepared. I "met" with hosts April Boden and Virstyne Henry via Skype...I've known April for a few years now, but it was nice to get reacquainted.
I went over key topics in my mind. I wanted to be sure I was mentally prepared for topics. I went over books, and essays, and articles.
In the time between the pre-interview and interview, my health plunged quickly, spiraling downward and seemingly out of my control. I seriously contemplated cancelling, but then I would have to admit what was happening, and that was too scary. I chose to fight to regain my health. (That's another story)
We made a few scheduling changes, and by none other than the grace of God, I regained my strength and ability, for the most part, to participate in this interview.
Although I've been doing this blog for quite a few years, and divulge personal stories, sadness, and triumphs.....I was most worried about how the listeners would evaluate me.
First thing to hate (on my list), is my accent. I HATE talking like a Wisconsinite...truly...and am more than happy to chime in with the y'alls down here in Texas. I worried about my pronunciation. I was worried if I would say "steeevia" or "steh-via".
Then, I worried I would go off topic, or forget to completely answer a question (which I did).
I worried I would lose my train of thought (which I did) and forget my point (which I did).

Without a degree or career-years under my belt, I also worry people will say I lack credibility, which is what really gets to me.

I have been doing this autism thing for 15 years. Me. Not therapists, not ABA. Not books, not groups. Me. And I think Tristen is an outstanding young man. No sitters, no respite. And very little spousal support.
A blend of spiritual guidance, and daily non-stop practice with my own autistic son, made me an excellent paraprofessional because that experience gave me a unique way of understanding autistic children. This can not be learned in an autism training class and does not come with a degree to hang on my wall.
It's just me. Doing what makes sense. Caring endlessly for children with autism. And giving it my all.
I am so blessed to have Truther Talk air some of my personal journey. I feel guilty that I said the wrong things or should have said more...or less....but the time to worry is over.
The truth is, these are the facts of my life, whether interesting or not....it is what it is. I share them in hopes of helping others.
So, I have decided to launch a new blog....
I want to keep true to "Autism and Health". I want it to be a place where caregivers can go and get ideas of different methods for helping autistic children.
"The Green Bean Girl" is going to be more about me, my political opinions, rants, irritations, or questions in general. Also, I am going to track my health journey.
I will continue to keep up with Tristen's health, and in all reality, it is intertwined. It is hard to take "Meadow" out of autism, because so much of who I am is because of autism. But I feel strongly I should have a more neutral blog for people who want to help autistic individuals, and I don't want them leaving the site as soon as they see something political.
Anyone interested in both can find more at http://greenbeangirl34.blogspot.com/
And check out my interview with the lovely ladies from Truther Talk on 11/6 !!!http://www.blogtalkradio.com/truthertalk

Wednesday, October 16, 2013

Those of you familiar with my blog know I don't treat Tristen like he has autism. He and his brother have the same expectations. We don't excuse him from responsibility. When Tanner has asked us questions about his brother, we tell him he has a more difficult time learning than he does. We don't go into detail...ESPECIALLY causation. It's a tough enough world out there for an adult who proclaims their child was vaccine injured. You have to have the facts to back up your statement, and my kids don't remember all the facts. They know we don't get shots because the ingredients in them are toxic, and their immune systems are not strong enough to combat them. This eases their minds and they feel good about it.
But I've never said, out loud, in front of my autistic son that his brain was damaged by a vaccine. I never explained the exact ingredients in vaccines that are dangerous.....until yesterday.

The boys are studying the periodic table in science class. Tanner is telling Tristen how he had to do a report last year in school on Mercury.

"Yeah, supposedly the mercury in thermometers was poisonous, so they stopped using it. I couldn't even read a lot about it or find pictures of anything interesting because everything was blocked on the school's computer. I don't even know if Mercury really is poisonous."

I explained to him the history of the men who used to make hats out of leather. I told them how they used mercury to treat the leather before they sold it to people. I asked them if they remembered the "Mad Hatter" from Alice in Wonderland. They said they did. I told them that was where the saying came from...."Mad as a Hatter" because the "Hatters" or the men who made hats started acting silly and goofy.

Tristen says..."Wait, Mom....is that what happened to me?"

How do you answer that? Can I be sure it was the mercury in the vaccine? Or was it just the vaccine in general given at two days old that caused his encephalitis? Or was it a combination of having the vaccine at two days old and then nursing from a mother who had just received the MMR? We will never know for sure, all we DO know is the symptoms of regression were clear after that vaccination.

I said, "Do you think you are silly like the Mad Hatter?"

"Sometimes." He said very seriously....he stared to the side....deep in thought.

I wish I could give him a definite answer. In my mind, it doesn't really matter exactly, because we are healing him now the best way we know how.

How will this effect his self image?

After leaving the conversation alone for a little bit, I came back to talk to him about it...just the two of us. I told him how proud we were of him for doing so well in school. I told him he was very smart and a very good boy who made choices to be a good person every day.

I asked him if he had any worries.

"Is there anything you are worried about, Tristen?"

"Do you worry about being different than other kids?"

He told me he liked Legos. I said that lots of kids liked Legos.

Then....very quietly....he said, "I'm worried I will grow up and have a brain like Dad."

My heart stopped.

"Honey, you don't have to worry about that. Dad's brain changed from the war....you aren't going into the army and going to war, are you?"

"Nope."

"See....so no more worrying, ok?"

"Ok, Mom"

When we think these special kids don't understand....sometimes they understand what they need to understand....and sometimes it's deep and profound.
He knows his Dad's temperament has changed since being in Iraq, and he knows he doesn't want to be that way. And somewhere...deep down....he knew Mercury had affected him....even though he didn't know how.
Now that's a smart kid :)

Friday, September 27, 2013

In my 15 year old autistic son's IEP (an educational plan put together by his teachers), one of his goals is to spontaneously engage in conversations with his peers.

I'm not gonna lie...I HATED this goal the minute his teacher suggested it.
Here's why:
1) First of all he has autism. His disability specifically inhibits him to do this spontaneously. That is like saying a child in a wheel-chair has the goal to walk unassisted. You can't make that big of a leap....it starts with baby steps....maybe literally depending on the case.....but the fact is, in either situation, the child NEEDS TO BE TAUGHT HOW.

2) Whenever faced with the task of making a goal for a student, one should ALWAYS think...is this a reasonable request? Is this something they will need in their life? Do I really for see them accomplishing this goal, or am I setting them up for failure? No parent likes to see the same goal on an IEP year after year....it makes it look like there is no progress being made.

3)Do you already have a feasible plan of how to accomplish the goal? Can you see crossing the finish line?

Now, Tristen is very good at following rules. Almost to a fault at times, because in life there are many gray areas despite being taught "black" and "white" "always" and "nevers". It's confusing.
So, if a teacher gave him a direction, such as needing to ask a student for help before asking the teacher, he will, but it causes a lot of anxiety, because in his mind, it isn't so much of the social interaction he is shying away from, it is more the worry that the student won't know the answer either or will give him the wrong answer. He wants to go to the teacher, because they always have the right answer.

It also is not in his wiring at this point to WANT friendships. That is the kind of autism that is specific to Tristen. He has NEVER asked to have anyone over for his birthday. He has NEVER asked for a play date or to have a friend "hang out". He prefers to sit alone. And from years of observation and knowing this child from birth, it has less to do than fear of social interaction and more to do with not liking what the person is doing or eating.....especially eating!

I see him now, as a teenager, being a bit more shy around girls, and less likely to give eye contact. I think that is age appropriate, although it manifests itself in a more autistic way.

When he finds out someone has the same interest as he does, he will talk to them, and be excited to do so, about that topic.

For example, his uncle liked Pokemon as a kid. Once, he saw Tristen playing with Pokemon cards and he talked to him about it. He later brought in his old cards and videos to show him. From then on, whenever his uncle came over, Tristen would be excited to talk to him about Pokemon.

It makes sense to me, then, if I were to teach a child like Tristen about making friends, I would start by teaching him how to ask someone what there interests are to see if he can make a connection, before simply expecting him to make a friend who he wants to sit by at lunch everyday.

Baby steps.

To have a job and be out in the community, social skills are essential. I focus more on manners than friendships. People can get along without having lots of friends.

In our home school "Skills" class we talk about social interaction. Tristen had the initial concept down.....if someone says "hi" to me, I say "hi" in return.

What it looked like:
"Hi Tristen!" (big, warm, animated smile)
"hi" as he averted his eyes from the person and quickly walked past them as quickly as he could to avoid any more interaction.)
Most of the time, as he is quickly rushing past, the person talking is trying to follow up and continue the conversation with a "How are you doing today?" which Tristen has completely ignored in his attempt to escape the situation.

So, we talked about how we have to wait for social/facial cues that someone is done talking to us before we walk away. And the only way we will know, is if we LOOK at the person's face.

The Baby Steps Look Like This:
1)You see a person. Know they will probably say "hi" to you.
2)Say "hi" in return.
3)Look the person in the face to see if they are done talking to you before you walk away. Expect a second question.
4)Answer the second question.
5)When there has been a pause in talking, you know the conversation is done.
6)End with a smile

I am happy to report that Tristen has made it all the way to step six within the first four weeks of school. We had interactions six days a week. Each day, we discussed the interactions and he was able to pick out stickers when he remembered the steps and responded appropriately.
That was enough. That's all he needed.

1)break down exactly what you want from the student
2)pick a reasonable reward for that child (stickers won't work for everyone)

Wednesday, September 25, 2013

Tristen did as he was asked. I read his paper. If God can do anything, he can help me THINK BETTER.

I had to choke back the tears that were welling up, threatening to blur my vision and give me away to the rest of the class. This is the first time my 15 year old with autism has ever talked about or shared the fact that he may be aware of his disability.

How, you may ask, could we have gotten along this far on our journey without telling him he had a disability?

Well, that is exactly what shocked his teachers last year when I asked that he not be a part of the unit "Learning about Our disabilities" in the CD classroom.

"You don't want Tristen to KNOW he has Autism?" his teacher asked, not careful to hide her judgemental tone. (I think they wanted him to wear a bracelet or T-shirt or something with his disability on it.)

Now, maybe that sort of idea worked for the students at McKinley High....they wore what made them different written on T-shirts and were proud that they were not perfect. They embraced the qualities and made being different ok.

The big difference there, isn't the fact the students from "Glee" who preformed "Born This Way", , fought most of their lives with the adjective, it was their level of understanding of life and people and relationships....all things a person with autism struggles to understand.

As parents, we have been very careful over the years how we talk about Tristen, especially in front of him. We NEVER introduce him..."this is our oldest Tristen, he has autism". Later in casual conversation we might tell the individual about him, but we don't want him to feel like he has a negative label attached to him at every introduction.

He doesn't really realize he is in special education classes. He never refers to himself as "special". (That's how he describes food that is ok for him to eat.)

As his younger brother was growing up, sometimes he would get upset and wonder why Tristen didn't have to read as long as him or have as much homework. We just told him it was harder for Tristen to learn, so we had to be understanding that things weren't always going to be the same. Tristen was ok with that. He knew school was hard for him.

In the past few years, we've talked to Tanner about how he is able to have a life his brother probably won't have. He is very understanding and very good to his brother....but we don't talk about negatives in front of his brother.

If a small child...four or five... came up to you with the dream of one day going to the moon....do you tell them how the odds aren't in his favor? Do you quickly squash his dreams and get him back to reality? "There is no way you will be smart enough to be an astronaut."

So, why don't I want my son to wear his disability proudly?

I think of the first time someone pointed out a physical flaw that I had never noticed, even though I was well into adulthood. After seeing what they saw, my self-esteem, which was not that great to begin with, took a nose dive. It's all I saw in the mirror and it made me shy away from people even more.

And then I think of my sweet boy, with no gile in his heart....pure and inocent...and someone points out he has a disability.

"You have autism. Do you know what that means? You can't relate to people. People can't understand you. You don't understand directions. You can't....you Can't....you CAN'T". All to a boy who always thought he could.

I am o.k. with telling Tristen's classmates...."Tristen doesn't like loud noises, like screaming in the lunchroom or the fire alarm." Tristen knows he doesn't like these things. It's specific to him, not necessarily autism.

So, maybe I am out of sync with the media's portrayal of High School students, and maybe I simply don't understand what the teacher's are trying to teach my son. Either way, he is MY son. I know him best. I want him built up and not torn down. I want him to believe in himself...to love himself. To know that being who he is....is ok.

There are kids who can understand their challenges. There are kids who don't. There is no excuse for educated individuals lumping them all together, instead of seeing them for the promising, unique, important individuals they are.

When that day comes, and Tristen asks me why he is different, I'll be ready. I will be gentle and explain things in a way where he will not be confused or put-down. My time-table is not someone else's time-table....and when he's ready, I'll be there....not because it fit into the lesson plans...but because it was the right time for him.

Tuesday, September 17, 2013

In the autism world there is a saying...."If you've met a child with autism, then you've met one child with autism." This is an attempt to describe what is called the Autism Spectrum. Autism is a spectrum disorder because there are varying degrees of severity. Some may not be able to talk, while others may go about public places unnoticed.
When my son was diagnosed at two years old in 2000, the diagnostic criteria was broke into three categories. Social, Speech and Development. He could not talk or point to objects. He did not babble. He was a "picky-eater" and had trouble sleeping. He lined up toys instead of playing with them appropriately. He did not come when he was called, and seemed overly determined.
Rashes and Fevers and Strep and Ear Infections and Vomiting weren't even considered.
At that time, he was thought to be too loving to his family and baby brother to fit the criteria for autism under the Social category. No speech...check. Development wise he didn't act like a typical toddler...didn't make eye contact....not meeting milestones....check.
After reading the evaluation reports from the early intervention team, and passing the hearing test, the Neurologist, who met us just that time, observed for a few minutes and decided Tristen was on the Autism spectrum....he had Pervasive Developmental Delay, Not Otherwise Specified.
I soon learned it was easier to just say "autistic" when people questioned his odd behavior....at least people had seen Rainman. PDD NOS was too hard to explain in the beginning.
When he was eight, we moved to Michigan and he was evaluated by the school psychologist who observed him a few times in the classroom.
"Mrs. Davidson, I think there must be some mistake, Tristen does not seem to have autism...not that I can see anyway."
I told him how to "poke the bear".
"Take him out in the middle of class to test him without giving him warning. Stop him from completing work and tell him it's time to go. Change his schedule. Have you had any fire drills?" The list of ideas continued.
Later that week, I received a phone call saying not only did they see the autistic traits, they had been able to label him autistic using the GARS assessment from the staff which ensured him special education services.
When a person meets a child with autism, what it comes down to is severity and expectations and experiences. Who do you know already with autism? That first person you meet you will judge all the rest against....which was tough as Tristen grew up because most people's reference was Raymond Babbitt. Either they were confused because he didn't act like that, or they were curious to know what special ability he had so they could be amazed and entertained....

Well, that's not how it works.

If you've met one person hit by a bus, you've met one person hit by a bus.

Just because two individuals were injured in a terrible accident, does not mean they will come away with the same injuries. They could be hit by the same bus at the same time and still have different injuries. There injuries could be very similar with only a few discrepancies.
That's life. That's chance. That's the unpredictability of our human form and how it works.
We know about genetics. That applies here as well. One person could have genes where they quickly recover. Maybe one person's background makes them flinch a little less than the other's. One could have a simple fracture, the other could die.
What about the bus? How big was it? How fast was it going? How old were the victims at time of impact? Were they trying to get away, or did they not see it coming.

There are thousands of scenarios that could be played out to decipher what kind of injuries a person would have after being hit by a bus.

"If you've met a child with autism, you've met ONE child with autism."

There is injury there. Somehow, there little bodies were injured and couldn't recover completely. Some have life-long pain and their injuries seem to be worse than others.

***I move to a new place, and introduce my son to new people.
"He seems fine."
"Doesn't he flap or walk on his tip-toes?"
Looks of confusion at my boys...."Which one has the autism" ( this says more about Tanner than it does about Tristen)
"He will be fine, don't worry about him."

On one hand, I am truly truly blessed by my Heavenly Father to grant me such a sweet and awesome and capable child that is a better human being than I can ever hope to be. I am so extremely blessed that we have come to this point, where he can not be picked out of a crowd....and as long as no one tries to talk to him, you would have no idea of his challenges.

You wouldn't know that on the way to church, we talk about how we have to answer a person's question if they talk to you. You wouldn't know we discuss how to smile politely and make eye contact.

You probably didn't see the little cues I gave him when he started to go off into his head and talk to himself....reciting his latest favorite TV show.

No one saw this morning when he had a meltdown over a new PE unit that was too difficult. The tears and the frustration...the slams of his body as he collapses in defeat.

You weren't there when we were in the ER and we had to tell the doctor this 147lb. 15 year old broke his hand spinning down the hallway.

No one else sees the delight in his eyes when we read a book at the fifth grade level and he knows almost all the words.

You can't here him now, plopping on the couch, stomping and reciting the funniest parts of movies with gusto over and over again.

Tristen has come so so far. I'm not going to have anyone take that way from him. That is what he earned for his hard work....to "seem fine"....even though he doesn't realize he wasn't fine to begin with.

Tristen is unique just as all children with autism are....and he is on a different part of his journey. One where we are working to find his place in the world because adulthood is coming up fast.

The "Bus" that hit my newborn baby was the Hep B vaccine, and his injuries are life-long. And just because when the "bus" hit a thousand other children and didn't leave a mark, doesn't mean it didn't hurt him.

Wednesday, August 28, 2013

Having recently moved to Texas, I agonized about putting my Autistic sophomore through yet another school change. Seeing this news report this morning evoked deep emotion.

I look at the sweet-faced little boy and see, not only my son, but many similar students I have worked with over the years. I try to fathom what on Earth would possess them to use such vile tactics? I can't begin to understand the thought process that would lead to the assumption that this type of "teaching" is acceptable. I wonder how many people probably knew of the teacher's and aide's practices. How long did it go on? Did anyone try to stop them? Did they go to the principal or the school board? Were they brushed off? Or did they believe this was "what needed to be done" for "those kinds of students"?

When I read the first grader had attempted suicide...my heart was breaking.

He could speak, but he did not tell for a long time.

The teacher(s) and aides were fired but parents were never notified of the abuse. This child at least should have immediately began counseling to try to ease the pain of his afflictions and taken out of the school district all together. In his mind, he might not have realized the adults who caused terror could not come back to school and lived in constant fear.

My heart breaks for this child and all those like him.

Working for a school district, moving around, and being very involved in my children's education...I know a lot of teachers. When I shared the thought of homeschooling my kids once we moved to Texas, I sensed a weird vibe. And I get it. Teacher's can't really be PRO homeschooling. If we all did it, they wouldn't have jobs. And they can't possibly think that just ANYONE can do it, or their years of college and degrees would be meaningless. So, I understand why they would be less than enthusiastic and minimally supportive.

But when you have experienced multiple districts, schools, teachers, special ed teachers, programs, aides, students....you can easily distinguish the good from the bad....the ones that care and the ones that don't. And when you are in the special education classroom as an employee yourself, you really get to see what goes on without the parents, or community for that matter, knowledge. You see how IEP's can be "fudged". You see staff's TRUE feelings toward special needs individuals. It starts to eat you up inside.

So, I chose homeschooling this year, and wish I would have/ could have done it all along. This first week of school we are getting right to the books....we are LEARNING. There is no week-long review of the "Rules" for classroom, assemblies, lunchroom etc. They do this for all kids, to "re-teach" the ones who don't follow the rules. Teaching staff believes if children are not following the rules, it is because they failed to appropriately teach them. So they spend A LOT of time re-teaching. A time your child could be learning, and chances are your child already knows the rules.

(I find supervision and follow through are more productive if you want a child to follow rules and expectations.)

I choose homeschooling because there is no one else who knows what is best for my child but me. Many many teachers believe they know better than the parents and blame us for everything. I want to decide when my autistic son learns about birth control; or if he is ready for an overnight field trip...and that doesn't make me a bad parent if I don't feel comfortable with it at the time it is suggested by the teacher.

I choose to home school so I can prepare healthy, organic foods and snacks for my kids throughout the day without them being constantly bombarded with sugary parties and rewards. I want to teach them WHY we eat the food we eat and what it does for their bodies.

I want them to know MILK is NOT good for you, and calcium comes from and is better absorbed from other healthier sources.

I choose to home school because I want my son to have his academic schedule adapted to his ability level! I have been arguing this for YEARS with teaching staff. He is quite ABLE, but not always at grade level. He doesn't need to draw six pictures of the solar system a day because the subject material he is expected to sit through is so above him he has no clue what anyone is talking about. It is NOT acceptable to simply give him an A for attendance because they "understand" he can't do the work. They should be giving him work he "can" do so he is not bored and he is getting something out of school. Otherwise they are just baby-sitting.

I also want my son to have a real curriculum, not one that is the same every year no matter if he has mastered the skill or not.

I printed out the news story above to carry with me, so every time I get that look...."Home school? Why?" I can show it to them. This is one of the worst case scenarios, but I am not taking that chance again.

After Hyperbaric treatment last summer, Tristen's mind was being open up to past memories and he was verbally sharing more than ever. He told me he remembered his kindergarten teacher spanking him. He said, "But mom...I was just a little boy! I just wanted to go home!" It broke my heart to hear my 14 year old, who was low verbal at the time, express such pain over something that happened so many years before.

The thing was, I expected something was wrong, so I made it a point to be at that school as often as possible. I signed up for every party and field trip and showed up unexpectedly with "treats". He started throwing up every morning at school and I would have to pick him up. He was never "ill". I had a feeling in my gut something was wrong. I questioned staff. I worried he was being "touched" by someone or mistreated in some way. No one had any ideas or gave any clues to what could be wrong.

He was in the same classroom, with the same teacher and aide for first grade when the teacher broke down in tears at a conference and told me that she was a victim. She told me that most of the school staff and principal was white and they were framing her for abuse. They alleged she hit a child with a ruler, but could never prove it, even after an investigation.

Tristen new the truth all along.

I hope and pray parents become informed. We WANT to trust our children's teachers so MUCH because the thought of having to leave them with someone who isnt' safe is inconceivable. But we HAVE to do our homework and research and CHECK UP! They aren't going to put cameras in classrooms anytime soon, I'm afraid. If we ALL start to be aware, it will be harder to hide it from us and things will have to change.

My thoughts and prayers are with all our little loved ones who are embarking this fall on a new school year. May God be with you and protect you and let us know when we should be alarmed.

Friday, August 2, 2013

Over the years, I have attended my son's IEP meetings, mostly interested in what progress has been made in the past year. I am curious to hear if his reading level has improved and if he is keeping up with his grade level in math. I am interested in how he copes with the day to day tasks in his school and how he gets along with staff and peers.
Every so often, a staff member would present a goal that didn't really make sense to me. I would ask questions and voice my opinion, but I never really felt like I was taken seriously. They were the professionals and they knew better. I would leave feeling anything but optimistic, and most often than not, that goal would remain on his IEP until he changed schools or professionals, and they would change it to something else.
What started becoming apparent to me as I worked as an educational assistant for children with autism, is that there was this unsaid understanding between the staff members that if you helped a child complete a certain task over and over and over again, and lessened the support over time, the child would do the task without support. This is not always the case. There has to be some sort of "desired outcome" for the student for this to work.
For example: Child will learn to button and unbutton jeans when using the bathroom.
Professionals assume that with correct prompting, a child will do this task. To me, it is as if they believe they can brain washed this child...as if they assume there is nothing going on in their heads at any given time and they will just comply to any command if practiced enough. This could not be further from the truth.
These children, verbal or nonverbal, are not computers to be programmed. They are real individuals with real thoughts and feelings....likes and dislikes. The obstacle in helping them learn is that they may not feel social pressure to do something that doesn't matter to them.
For example: In the case of the autistic child who is expected to learn to button his pants.
He may have the fine motor skills to button his pants after using the bathroom, but he has no understanding of social expectation to do so. Does this child care if he is wearing clothes? If he is seen by others in his underwear or with his pants down? If he does not, we cannot make him understand that is socially unacceptable. Over time, with lots of patience and waiting, you could teach him he was not allowed to leave the bathroom and go on with the next task of the day until he has buttoned his pants. This would be beneficial as a life long skill, but is there staff available for such a task? If it were possible to teach this way, he will learn it, but what he has learned is that he has to button his pants to leave the bathroom, not that leaving pants unbuttoned or down would be inappropriate to society.
I remember an IEP goal set for my 14 year old son, during the first year of High School. Although he attended classes and lunch with the same students he had since fourth grade, he still chose to eat alone at lunch without any social interaction. The teacher put in a goal for him to sit with his others on his own and to strike up spontaneous conversation with peers. At this time, he was only speaking to staff when he had a a question.
Yes! This would be lovely! To see Tristen being more social with his peers and having real friendships....but when you put in a goal as a professional, you should be thinking about how the student can achieve this goal. The professional assumed that in redirecting Tristen to sit with his classmates and ask them questions, he would just automatically do so over time. He has autism! Being social just does not occur to him as being important. How can you MAKE him think that is important? You can't.
Tristen is a very sweet and well liked young man. If you were to tell him everyday he HAD to sit next to a student...he would. If you told him he needed to talk to them, he would become confused and cry. He would want to know exactly what you wanted him to say to that individual. And if you told him, he would say it and then be relieved when the exchange was over and head back to his quiet spot by himself where he feels the most comfortable.
This goal bothered me because I couldn't figure out how to logically execute a teaching strategy so he could be successful. That is a part of autism I can not change. I can continue to expose him to the outside world to keep him from reverting too much into his own world, but I can't make him WANT to interact with others.
Almost a year after the introduction of this goal into his IEP, Tristen had made no progress.
This summer we were able to connect with some old friends. Tristen had another little buddy with Autism when he was in preschool....he knew him a few short years before they had to move away. It has been around 10 years since seeing his "friend", of whom he could not speak to during the time they had played together with their Thomas trains. He was SO excited to meet up with his "friend", he ran up to him to say "hello". Later, Tristen asked me how old his friend was, and I told him he should ask him. About twenty minutes later, he ran up to him and looked him in the eyes and said, "I'm fifteen years old". This was his attempt at a conversation, hoping to find out the boy's age.
When we went to lunch, it was the first time Tristen had not rushed and fought to be sure to sit by me. This time, he watched his friend and waited for him to sit so he could sit next to him. They did not talk or have a deep conversation, but I knew this was huge.
Why? Because this was HIS decision. No prompting. No training. No working. HE wanted to sit next to his friend. This was all Tristen and all his work leading him to this accomplishment. I was so proud of him and the young man he is becoming. His successes are all HIS.

Saturday, June 8, 2013

Typing the title of this post, my eyes are filled with tears.
I remember the first time I saw my little guy. I had started subbing for the school district to earn money to pay for biomedical treatment for my own son with autism. Some kids intrigue me. He was the first.
I started subbing almost exclusively at the school in town where they send all the autistic students. I took every job I could with them and loved every minute of it.
Not long into the school year, I was offered a long-term sub job for this little blonde autistic boy. We were destined to be best friends.
That was kindergarten, and I was lucky enough for that long-term sub position to turn into full-time employment and that is where I've been....he and I together for close to five years.
Thursday, I had to say good-bye.
My family is moving to the other side of the country. My husband had a job at the base here, but when the contract ended, he looked for work in the area for 15 months. His unemployment ran out in January, so he went to live with his parents to look for work there. Finally, in March he was hired.
It's been a tough road trying to support a family on an Educational Assistant's salary. Not to mention, we all have allergies, gut issues and immune dysfunctions, so our food and medical costs are higher than most. God helped us make it through, but at this point the only thing for our family to do to survive is to be together. We simply can't afford to live apart, and the boys miss their dad.
Leaving is breaking my heart.
The last day of school was torture. I had to fight back tears all day, and I am not a weepy person. I have been through a lot in my life, a lot of struggle and pain and unfairness. I don't get worked up often. I couldn't control it as hard as I tried. I swallowed over and over and over to keep the tears from falling. I breathed in and out and in and out counting the breaths. All I could think in my mind was how he wouldn't understand why I wasn't there. He was going to think I abandoned him. I will disappear.
All the "lasts" got to me. The worst was the end of the day bathroom time. Sounds ridiculous, I know, how could taking the child to the bathroom be the saddest moment?
I thought back to those first days. Those first days where I looked at him and knew he didn't need diapers. I looked into those adorable brown eyes and I saw his potential. He was smart. He could learn...and we were going to tackle potty-training together.
I thought about all the times he would get so mad at me. He would be so frustrated that I wanted him to sit on the potty and he didn't want to. I was patient and waited for him to be calm and sit for just a few minutes.
I knew once he got past his fear he would be able to accomplish it. I wanted him to know I would be there for him and he didn't need to worry. I told him it was going to be o.k.
And now, there is no struggle, no diapers, no pull-ups, no accidents and there hasn't been in years. He is so brave, he even uses all bathrooms on outings....even outhouses.
And on our last day together, as I am helping him button his shorts, he puts his little hands on my cheeks and leans in to give me a quick kiss next to my nose. He laughs and claps his hands together in his unique non-verbal way.
I want to hold him and cry for hours. I want him to know how special he is to me and if I had it my way, I would never leave him.
I think he knew something was wrong. I think that time he was telling ME, everything was going to be o.k.
My dear sweet boy, you will forever be in my heart.

Friday, April 26, 2013

There are people in the world who wonder why I do what I do. I get a comment on it almost daily. "Why do you do BLANK for the special ed kids? Especially when it comes to school field trips.

"They don't know what that is all about."
"They would rather be home watching TV"
"What are they going to get out of it?"
"It's too much work."

And, unfortunately, there are still those that frequently comment on why special ed children are even allowed in school.

There are so many things an autistic child can learn from a field trip it is hard for me to even know where to start.

1. Experiencing the world

Getting out and about in the world...experiencing new places and meeting new people makes any individual more well-rounded. I always tell people who live in our small town, they need to move to city somewhere far away and live for at least a year, just to have the experience and see what life is like in other places. It really opens your eyes to so many cultural things and you become more thoughtful about the dynamics of where you live. Being Autistic doesn't make that fact not true. They are seeing, tasting, hearing and feeling things outside of their normal life that help them to understand the world better and in more depth. It also helps with their overwhelming anxiety to experience new things and realize everything is still o.k.

2. Learning to cope with new places

Maybe the soda from the fountain tastes different because the water they use to mix it is different. Maybe the sound of the bumps in the road are different. Maybe the air smells different because of the trees and dirt. Learning to cope with these changes of a new place will increase their awareness of the outside world and help them to compare and contrast things they may never have had the chance to before.

3. Learning to cope in large groups of people

There is a certain energy about a crowd. You can feel it when you get too close, and especially when the crowd is anxious or excited, it can be very unsettling for an autistic child. I find staying calm just outside of that surge of energy....a few feet back, is the best way to help the child cope. Still close enough to hear, see, smell, sense the idea of what is going on around him/her, but not close enough to become so overwhelmed a meltdown may be in order. Keep him/her calm with familiar songs, toys, games, rocking, cuddling. (I save the extra special lap-time or cuddle time for these very tense moments, because at a certain point the child gets older and those sort of things become inappropriate.) Even if the child will be in a group home, dealing with crowds at the care facility or on outings will be a must. It will be much easier if the child is exposed to it frequently, to help build a tolerance for social situations. Learning how to act appropriately in public, like being quiet (if that concept is understood), personal space issues (if the child likes to caress hair or clothing of strangers), and to keep their mannerisms calm as well (if this is also understood),

*My son is 15 and has autism. He giggles to himself and spins in circles at home, but he knows when we are on an outing he must refrain. I believe self-control helps the child to pull out of his/her "head" and join the real world when it is appropriate to do so. When it is his free time, he can do as he pleases to stim or spin in a way that is familiar and comfortable to him.

4. Learning to cope around new people

People sound, smell, feel and look different, each and everyone, which can be overwhelming to a child who is very sensitive and detail oriented. Helping him/her to be comfortable and not scared by a new person is essential for a fulfilling adult life.

5. Learning to adjust to a different schedule

I personally like to keep schedules the same for my autistic friends. I know it eases their anxiety and it helps to keep them calmer when a change does occur. When we are on an outing, I like to incorporate the same phrases where applicable and mini routines he/she will recognize from school. We might set up our lunch the same way we would at school, using the same key phrases. We always do the same bathroom routine, even using picture cards he/she is familiar with from school. In a way, I want them to know that even though there are changes and it will be a little frightening, I am there and I will keep you safe and calm. I do not talk much on field trips...my job is to show the anxious child I am calm. He/she can sense my mood and judge my actions very easily. Also, if you are too worried about getting your own social time in, how can you focus on the needs of the child? The day is not about you. The children I have worked with can tell quickly when they are being ignored, and tend to act up, get into things, revert to bad behaviors, whine, or have bathrooming accidents when this occurs.

6. Learning to use public restrooms.

This to me is the most important reason to take a child on frequent outings. Many people do not like public restrooms for various reasons and the autistic child is no different times 10. They are concerned about the sound, the echo, the feeling of the toilet, is it too high, too low, too cold, too warm, how does it flush?, does it flush on it's own?, how small is the stall?. how does the toilet paper feel?, is it rough?, is it soft?, how does it smell? etc etc.
I like to start every entering of a building with a bathroom break....just get it out of the way first thing. We enter a new place, we find the bathroom and we go through our routine. In early potty-training years, I have brought a picture schedule from school with each step on it and candy for a reward for handling the situation appropriately.
There is never a question if the child has to go or not, we go, go through our routine and try. That's it. This is best to avoid accidents and rid one of the need for diapers.

7. Learning to cope under different sensory overload, such as sound, texture, temperatures

Everything around him/her will be bombarding this child. I like to have my bag-o-tricks handy. I start with the expectation of the child having to sit quietly and "listen" for an appropriate amount of time...each child is different. When I know the child has done his/her best at this, we may start with a special fidget that he/she only gets to use on fieldtrips. This is only done if the child has not melted down to receive the toy, which would be reinforcing the negative behavior. Carefully watching them should tell you when they are getting agitated before the meltdown if you are observant. Rocking may be a cue or hand wringing, etc.

When that fidget has lost it's appeal, I may have another fidget, or maybe a favorite book. After a while of good behavior, we may sit down and have a snack. It is good to change objects with each transition as well. This type of ritual makes sense to autistic children and helps them to remain calm and cope.
My last resort, before technology, would be candy. I believe candy should also only be used in delicate situations such as this.

For a big-time upset, like a bus breakdown or traffic jam stand-still, I get out the Ipad. I hesitate to do this too soon in the trip, as the child loses out on many learning experiences when immersed in the technology. They are missing out on the learning experiences I mentioned earlier.

8. Any teaching opportunities that may arise.

I like looking for ways my child can learn while on an outing...something they may be working on as a goal at school, or something difficult for them. For example, if a child had trouble going up the stairs, maybe he/she only stepped up with the right foot instead of right left right left....take the time and be patient and encourage them to use their right, then left, then right, then left. If they struggle opening doors, be patient and let him/her open the door when entering a room. Praise them and be excited for their efforts.

Never overlook an opportunity to teach. Take chances and try new things with autistic individuals. Instead of thinking what they can't do, think about what they just might be able to do, if you were only to try. Kids in general live up to what they are expected to do. If we just expect these children to be constantly cared for and secluded in the house, that's what they will be. We have to give them the chance to reach their potential. You just might be surprised!

Friday, April 19, 2013

If you are going to a place the child has never been before, you may have to be creative when explaining where you are going. For example, if you were going to the movie theater to see a movie that maybe the child is unaware of or he/she is uninterested in, you may need to tell them you are going to eat popcorn. If the child knows what popcorn is, and enjoys eating it, it will lessen their anxiety about where they are going without lying to them.
Some other tips on movie theaters:
Autistic children already live in a world similar to a movie theater. We enjoy going to the movies because of the large screen and surround sound in a dark room, making it the ultimate experience for our senses. Children with autism, who experience sensory overload everyday, may not think this is an exciting place to be. It may be overwhelming and over-stimulating.
They may also not be able to handle the anxiety of not knowing what to expect from a new movie they have never seen, especially when going into sensory overload. We should always remember, that just because something is fun and enjoyable for us or most children, does not mean it is fun and enjoyable for Autistic individuals.
You may wonder how someone with autism who has very specific, delight from movies or television could not like to go to the movies. You may also wonder how they could ever like any video or program if they don't like watching things they haven't seen before.
This is where their unique heightened senses come in to play. First thing children with autism like is commercials. They are short...often funny in a exaggerated sort of way....catchy or have theme music or jingle. They are too short to get too much anxiety worked up about it, and don't have a plot or characters to really be concerned about. Plus, they could hear the sound from the TV in a non-confrontational way....like in the back of the house in their bedroom.
Once they have heard something at least once and realized it is nothing to be scared of, they will either LOVE it or HATE it!
We started taking my autistic son to the movies when he was about 3 or 4. Periodically, children's movies for military families would be shown for free on post, and so we liked to take advantage of the opportunity thinking the boys would really love it. But it was the opposite. Tristen, even with popcorn, pop and goodies, could not take the booming sound and anxiety of what was about to happen on screen. We spent the whole movie hiding behind the back wall and him peeking around the corner periodically with one eye. He never cared for that movie even as he got older. But we kept taking him and trying to work his way into the audience. Sometimes it would end up being a favorite movie we would later buy and he would watch and watch until the tape broke. And it got better each time we tried taking him, to where now at 15, we could go to just about any movie and he will be ok. (If it gets a little too intense, he will ask to go to the bathroom)
The purpose of field trips and outings it to help the kids to overcome their fears so they can have more enjoyment out of life and be out in public without completely melting down.
I always take the autistic child to use the bathroom as soon as we reach our new destination. It is good for them to get familiar with different bathrooms because they tend to be a scary place for them. Once they are introduced to the bathroom, I ask them if they need to go now and then to be sure they do not have an accident.
It's good to have your "bag of tricks" just as if you were taking your toddler out. Books, toys...favorites...treats and maybe even candy as a last resort.
As always, remain calm. Be respectful an courteous but do not worry about what others are thinking about the situation you may be in. Be in the moment, there to help your child.

Wednesday, April 17, 2013

There are not always clear instructions when going gluten and casein free. It is easy for someone to become confused about it's effectiveness.
My children and I have been gfcf for about 4 years. We have allergies and sensitivities.
When I first started the diet, I did not see a huge difference or withdrawals from my children. I myself went through the worst withdrawal from when I cut out sugar and starches. We cut things out slowly and replaced them with substitutes and some things we just stopped eating all together.
One of the biggest misconceptions of the diet, is that there will be an immediate reaction to a food that the child does not tolerate well. Most of the time, the reaction comes the next day. It is their mood when they wake up in the morning as well. They may sleep so hard they wet the bed or sleep for 10 to 12 hours and still feel tired the next day. Everything will irritate them. They will CRAVE the food and search desperately for more. This is not a fun day for anyone.
Another myth is that oats and barley do not contain gluten. If you are not cutting these out, you may not realize the benefits of eliminating wheat, because they are still consuming gluten. One way to confirm a reaction to these foods is to look for what I call "the bottomless pit". The eating of this food usually goes on and on and on as if the child cannot tell when they are full. They will eat and eat and eat it as long as you put it in front of them.
The severity and timing of the reaction also depends on the status of the gut. If the child is having regular bowel movements, the reaction might not last as long...maybe 24 hours. If a child is severely constipated, his bowel being so impacted, he may not react to the food right away because it is not reaching his intestines as quickly as when proper digesting is occurring. In addition, if a child is not completely expelling his bowels, and sticky feces is coating the intestine, they may not feel the effects as quickly because the sludge lining is not allowing the in-tolerances through and into the blood stream. Alternately, if a child often has loose bowels has just had a large bowel movement, or had a laxative of some sort, the reaction to a food may be immediate.
The cravings for foods such as these are severe. The longer time you space in between infractions the better. If a person were kicking an addiction to cocaine, you would not give them "just a little" crack because it "won't hurt". It DOES hurt, mentally and emotionally, because it sends you back to square one of kicking the habit.
Be careful not to substitute with sugar and other starchy carbs. These can become just as addictive. Sugar causes yeast to grown in the intestine causing more cravings and gut dysfunction. It should be avoided indefinitely.
I have observed many children on the spectrum and their reactions to food. I myself have food reactions, allergies and intollerences. My son with Autism reacts to gluten and casein even though he does not have a confirmed "allergy" to them. My other son who is not clinically diagnosed with Autism, but has sensory issues is allergic to wheat and dairy and has very obvious reactions after eating them, like mood swings, fear and anxiety.
Eliminating foods is an easy way to help children with issues navigate the world. It is easy because it is only food. It is amazing because it is only food. No one would go to that much effort to change their child's diet and then stick to it, if it did not work.